Paternalism in NY: Dept of Health attacks patient-direct testing

Great Debates
1

In most of the US, there have arisen “patient-direct testing” companies that are set up to allow ordinary citizens to order medical tests so they can get lab results that they desire.

The need for such a thing arose in part from the realities of modern HMO / insurance systems — ins. companies often won’t pay for tests that doctors are willing to order, doctors are dissuaded from ordering any but the most standard tests per relevant condition by the HMOs — and in part it can be seen as an element of the general move for patients to be better-informed and more involved in making their own health care decisions.

Patient-direct testing is seen as a Bad Thing by some medical & administrative personnel. Based on the statements they make about why they oppose it, though, many of them either misunderstand the situation (dumping it in categorically with “get diagnosed and treated over the internet” web sites and whatnot) or they are deliberately misrepresenting it in order to discredit it.

They say “It is a Bad Thing for patients to be treating their own medical conditions. Only doctors should be doing that.”

(But once having obtained your lab results for your blood or urine tests or whatever, you are no more authorized to prescribe or otherwise treat your condition than you were before.)

They say “It is a Bad Thing for doctors to be prescribing treatment for patients that they don’t even meet in person.”

(But a lab test is not a treatment. It doesn’t modify anything. It only provides information. Information about one’s own body.)

The statements of some opponents to patient-direct testing are more accurate and do not misrepresent anything, and here we come to the true core issue: paternalism —

They say “It is a Bad Thing for patients to be able to order tests and obtain information on their own body because they don’t have the medical training to know what they’re doing. They could read on some Horrible Web Site that everyone should get tested for low B12 levels if they feel tired and short on energy or something like that, and then they come into our offices with these lab results and telling us they think they are B12 deficient and then we have to put up with uppity patients who think they know it all. Patients shouldn’t have independent opinions on those things, they’re too ignorant. It is for us to to tell them what’s wrong with them, and it is for them to trust our authority and believe what we tell them.”

Yeah, that can happen. Sorry it rocks your boat so bad that folks coming into your office might be developing opinions (right and wrong) about their medical condition, but it seems to me that’s an inevitable outcome of patients taking responsibility for learning more about what’s going on with their bodies and making their own medical decisions. Sorry to hear you’d prefer compliant patients, the ones who, when asked what medication they’re taking, say “I take two pink pills in the morning and three green ones and night”. Really sorry to discover that you’d so strongly prefer ignorant and compliant patients that you’d actually stand in the way of people who want to order their own lab tests.

The New York State Department of Health has just indicated that they intend on making patient-direct testing illegal in New York. This follows fairly closely on the heels of a similar initiative in California which was rolled back through consumer input to bureaucrats and politicians and which was administatively reversed after one year. For any large state to adopt such an initiative could pave the way for other states to follow their lead, and it could become widely illegal for citizens to obtain information on their own bodies and bodily processes at their own initiative. The New York policy, under study and to be ruled on by the end of this month, appears to be part of a general assault on doctors providing medical treatment and prescribing for patients they never meet in person—a worthy and reasonable action but one to which the extension of the rule to patient-direct testing is wrong and inappropriate.
In light of TubaDiva’a stickynote on email campaigns on the board I am waiting for clearance from her before posting any specific requests or recommendations for what to do about it if it is of concern to you.

2

Not an in-depth reply, just a comment. It has been ruled by the courts before that the needs of the greater community outweigh the rights of individuals when it comes to health care. For example, the quarantining of “typhoid Mary” was justified on the basis of public health. The containment of TB is another case where public safety trumped individual rights.

And I can envision scenarios where individual misuse of diagnostic tests, especially without reporting results to public health officials, could result in a decline in the overall health of the community at large.

I look forward to debate on this topic!

3

I’m sorry, but I just don’t understand the purpose of patient-direct testing unless you are going to either treat yourself , use some sort of internet site or demand that your doctor provide a particular treatment. I mean, okay, perhaps an HMO won’t pay for a particular test, and perhaps the doctor is unwilling to order it because the HMO won’t pay. What prohibits the doctor from ordering the test and the patient paying for it, without involving the HMO? After all, the patient will have to pay for the patient-direct test. As far as patients getting info, I’ve never had a problem finding out my test results from my doctors. Do most doctors
not give test results to their patients?

4

One issue: Testing done via an insurance company/doctor usual winds up on your “permanent record.” So if you decide to get a genetic test to see if you’re at risk for a certain condition, etc., and you do it through regular channels, then the insurance companies are free to deny you coverage based on those test results. Patient-direct testing avoids this. If the results come straight to you, the insurer need never know.

Some might decry this as screwing with the health system (which works in part by charging high-risk patients more). Too bad, I sez. More power to the individual. I don’t buy Qagdop’s example re: the needs of the many in such a case. This isn’t a communicable disease, it’s just info.

5

I don’t think that it should be legally prohibited, but I also don’t think it’s a good idea. Three reasons:

–A good clinician can seriously improve the yield of lab work. He can recommend against tests that aren’t likely to be fruitful, and can recommend tests that you might not have thought of or been aware of. It doesn’t take many unnecessary tests to add up to the cost of a basic office visit with a generalist.

–Medical tests are useless without plans for follow-up. Your example of B12 deficiency is not a bad one, but in order to get the shots to treat it, you’re going to have to go to the doctor anyway.

Abnormal tests need to be followed not by a treatment, but by a diagnosis. One of the most common mistakes that young doctors (and probably some old ones) make is seeing a low potassium in a hospitalized patient and simply giving potassium, without ever thinking about why it’s low. It’s usually obvious, but you need to know why before you treat it.

–Getting tests done and following up on those tests is not without risk. Take CA-125, a test that some irresponsible e-mails and a recent Reader’s Digest article suggest that women have as a screening test for ovarian cancer. If it’s abnormal, the only way to follow up on it is with surgery, and you are far more likely to have a bad outcome from the surgery than you are to find an ovarian cancer early enough to make a difference.

In other words, doing the test and following up on it demonstrably does more harm than good. (If you’re not going to follow up on it, there is no reason to do the test.)

I personally believe that the same is true for prostate cancer screening with the PSA test and the digital rectal exam in asymptomatic patients–it’s extremely controversial, but the data seem to me to clearly show that we are doing more harm than good with this approach.

So while tests, as you say, only provide information, they can start down roads that lead to worse outcomes.

I want nothing more than for my patients to be educated and informed about their conditions. However, there is a load of misinformation out there, and a lot of people who profit from that misinformation. It isn’t really paternalism; patients who are able to educate themselves and test themselves and follow up appropriately are OK by me. Uninformed pateints bug me. But misinformed patients are just plan hard to deal with, especially when those beliefs get fixed.

6

I’m torn on this issue. While I am a supporter of people being in charge of their own health and informed choice, I am beginning to see a downside to patient-directed testing.

I moderate a list for parents of kids with autism who are following a biomedical approach. There’s a hell of a lot of tests you can do but there’s not a hell of a lot of doctors who work with the results. I don’t do much testing with my kids – I’ll work with issues empirically with a hcp involved but I really really do not see the point of doing tests which give you info which is of dubious use. Or even worse get a test result and act on it without a doctor involved.

I think I’d be inclined to try and keep genetic testing private if I possibly could. Although from a genetic standpoint my kids are toast anyway.

7

• In the NY area, and, judging from online conversations I’ve had with others in other states, it is typical that a lab will “officially” charge an intimidatingly high rate for their labs, and that’s the price you, the patient, pay if your doctor orders lab tests and your insurance won’t cover it and the labs actually do go ahead and do the tests. Often, perhaps typically, the insurance companies only pay a much lower amount when they do pay and the labs write off the rest, so the “official” charge only applies to private uninsured pay. But the labs that work with patient-direct testing have much lower fees. In the NY area, a panel of tests from Quest as ordered by your doctor can cost a whole lot more than the same panel via patient-direct testing, from the participating labs at the rates contracted for by the patient-direct testing org.

• More often, if your doctor orders tests that your insurance doesn’t cover, the labs will simply not do them. If your doctor is explicit and insistent, this can be overriden, but the labs, the insurance companies, and the HMOs apparently rely a lot on a computerized “standard and appropriate” schedule, and in the personal experience reported on many of the specific-ailment boards the doctors don’t tend to advocate for you getting tests that might prove useful and informative but which aren’t on these schedules even if you’re willing to pay full price for them.

• Doctors in HMOs are kept busy and aren’t supposed to spend 45 minutes with each patient listening to a recitation of medical concerns, interests, and ailments that the patient would like checked on, ruled out, kept tabs on, etc. Doctor J writes “Medical tests are useless without plans for follow-up. Your example of B12 deficiency is not a bad one, but in order to get the shots to treat it, you’re going to have to go to the doctor anyway”. Yes, precisely my point (it’s information, not treatment), and with a limited amount of time you’re going to have in the doctor’s office to discuss stuff, if you can rule out B12 deficiency on your own that’s one less thing you need to bug the doctor about.

• If you have a chronic condition where regular retesting and charting of levels is advisable, this can mean having to schlep to the doctor’s office monthly and pay an office copay to get a blood draw or urine sample taken, waiting for the results to come in, then coming in again to go over the results. And this exacerbates the problems with labs your insurance company doesn’t like to pay for.

• Paternalism again. I’ll speak from my own personal direct experience: when the doctor orders the tests, the lab results go to my doctor’s office, not to me, and then I get a voicemail or a postcard that says “Your labs were fine”. Jesus fucking Christ, don’t tell me “my labs were fine”. I want to know micrograms per deciliter, or parts per billion. I want the lab report. I may well be looking up info to find out where my results lie against the backdrop of “normal healthy” folks, where it lies in comparison with folks with my ailment not on Medication X, and where it lies in comparision with folks who, like me, have been taking Medication X for six months. Don’t condescend to me.

• Not that the individual doctor is doing so but that the individual doctor doesn’t have time to bang out a separate form of communication for each patient depending on whether they know a gram negative from a microgram. And while the doctor is almost invariably going to know more than the patient, the patient may still have a difference of opinion which is well-informed and legitimate, including what the lab result implies or whether or not doing this or that lab is important or necessary. There are many endocrinologists who don’t see much reason to do tests other than a TSH to verify dosage on hypothyroidism, but there are other labs and there are dissenting opinions about the usefulness of getting them or the reliability of TSH on its own. There are also differences of opinion about the desirable TSH level, such that “your labs were fine” becomes a next-to-useless communication.

8

I work for a company that evaluates medical research - we look at studies and clinical research and try to determine whether it’s good quality or not, whether it actually proves something, and so forth.

And the patient-directed testing is getting to be one of the issues we look at.

Now, some patient-directed testing is OK and even encouraged - blood sugar testing for diabetics, for example, or blood pressure monitoring.

But some of the tests out there being promoted are just crap - they’re overpriced and don’t give either reliable or useful information. Some of those companies are more interested in offering the scientist/doctors I work with junkets to tropical islands and what are essentially bribes for us to say they do good work rather than do real research or come up with a good, sound, reliable, and useful test. Do you want to do business with a company like that?

Then there is the whole issue of “false-positives”. You feel fine. You take a test. They “find something” and the next thing you know you are getting even more tests, or biopsies, or even surgery that it turns out you don’t need after all. With those full-body scans that are being promoted, for example - you might discover a “horseshoe kidney” (which I understand is a benign condition that needs no treatment) or even that you’re missing a kidney entirely (sometimes a person is born with just one) - omigaaaaawd, call a nephrologist! Except this isn’t a problem 99% of the time if there are no symptoms, it’s just human variation at work. And lots of folks have benign cysts or tumors or anatomical quirks or calcifications that are never a problem their whole lives long but can easily generate more and more testing and intervention. A good doctor will take the two minutes to explain to you that this sort of thing crops up from time to time, it won’t affect your health in a major way, and it’s nothing to be concerned about. Do you think the rep from the testing company is going to do that? It will be either “We aren’t qualified to diagnose” or “We have this other test…”

And one more thing - many tests are invasive to one degree or another. Even blood tests, whether a pin prick or blood draw, which are seen as pretty innocuous require some basic sanitation and even so can result in infections. Anything involving “contrast” for x-rays or other imaging technology can result in bad or even fatal reactions to the substance in question. Full-body CT scans expose you to radiation - if you’re in a horrific accident the benefit of discovering injuries outweighs that minor risk of cancer down the line, but getting one of these every year or so for a “check-up” is exposing you to radiation for no pressing reason. It boggles my mind that I know some tofu-and-granola types who are convinced irradiated food is deadly toxic will willing subject *themselves * to full-body irradiation.

If every test and every testing facility were perfect it would be a whole 'nother story, but there needs to be some oversight of direct-to-consumer testing, if only to prevent fraud. I don’t think outright banning it is the best route, but niether is a wild west free-for-all.

9

Let’s face it: the only people who are going to get extra tests for stuff are hypochondriacs. And it’s not like doctors in the U.S. skimp on the tests anyway-- hell, last time I went for a physical, the doc gave me an EKG in her office-- which is completely stupid, since I’m a healthy, moderately active male in his 30s with no family history of heart disease.
But when I do get medically necessary tests and exams, I want to know the results-- and I get them, and if I don’t understand what a particular count means, I get it explained by someone more knowledgeable than me.

10

Let me see if I understand this correctly. It’s patient-direct in the sense that a doctor doesn’t order the test. But you’re not talking about a person going to ust any lab and ordering the test. You’re talking about a person belonging to some sort of organization which has negotiated lower fees with participating labs. Or are you talking about labs which only do patient-direct testing?

11

doreen, the organizations I’m referring to offer a menu of labs for a discounted price. The patient-direct provider negotiates a contract with labs on a national scope, based on volume and bundling and etc. which makes it feasible for the labs to do the work far more cheaply than they would for an isolated individual. And when your insurance company isn’t covering the cost you are indeed paying as an isolated individual, i.e., no discount.

It can be as much of a discount as 1/3 the going price.

The labs themselves are generally not dedicated to patient-direct testing. They’re ordinary labs. They do testing as ordered by your regular doctor. They aren’t fly-by-night organizations.

And the patient-direct services I’m familiar with, although they do offer specific “panels” of tests that are aimed at a particular ailment or situation (e.g., a panel called Lipids Panel might consist of total cholesterol, HDL, LDL, triglycerides, homocysteine, and ratio HDL/LDL), are not laden with “come-ons” to get hypochondriacs to test themselves unnecessarily for everything under the sun. You pretty much need to have some idea of what’s out there, to have done some of your homework, to participate.